following the progress of our premature baby

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Going Nowhere Fast

Oliver’s been pretty snotty for the past week and has struggling to clear it himself so he has needed some suctioning to help him. It’s hard seeing him look so fed up when he’s coughing and struggling to breathe through his nose.

In other news there isn’t much news! Oliver has made no progress with his feeds as we’re caught in a cycle of him not tolerating more feed and it causing him a sore bottom which means less feed so he’s reliant on PN…which in turn isn’t good for his liver. Oliver had a barium study last Friday to see if he had any obstructions in his bowel that were causing him to struggle with his feeds but this came back clear. We have been able to try Oliver with some fruit puree though and he’s so far sampled mango and apple and enjoyed these and it’s nice to see Oliver enjoy tasting food as all his feeds go through his NG so it’s only yucky medicine he gets to taste otherwise.

Oliver multitasking, sucking his thumb and reaching for his ball

This Friday sees the outcome of Oliver’s liver transplant assessment and we’re pretty much certain of the outcome. Our brave little boy needs to be listed for a liver and small bowel transplant. After pinning our hopes on his stoma reversal being a success this hasn’t given us the progress we’d hoped for and Oliver’s liver remains fragile.

To say we are frustrated is an understatement, we thought we’d have a premature baby, let alone be in hospital after almost 9 months in this situation. There really is nothing harder than watching your little boy growing bigger everyday whilst knowing we are still no closer to getting him home. Still, every day is a new day and we’ll take it as it comes.

4 thoughts on “Going Nowhere Fast”

Have read your amazing story with great interest as it is practically reading the story of my premature baby who also suffered from NEC and had the majority of his bowel removed. I brought him home on TPN finally after 7 months. He had his transplant assessment at 12 months old and we got THE call 6 months later so at 18 months old he received his new liver and small bowel. On Friday, 21 February he will be 6 years old. I hope this gives you some inspiration and hope for the future after the trauma you have gone through as a family over the last 9 months. I wish you all my very best x